A few years ago, my friend with muscular dystrophy had to purchase a new van. See, Adam is a psychologist, and has to get to the office to work. But before he was a psychologist, he was a PERSON–still is, naturally–whose needs include leaving the house to you know, LIVE LIFE, so he needs wheels, as do we all. Unfortunately, muscular dystrophy doesn’t allow nimble grace in the way of ambulation, so vehicles designed for persons with disabilities tend to get the shit beat out of them. Adam’s new van cost about $60,000.00 Yes, 60K, sixty thousand dollars, for a minivan, not a super luxe high-end Bose stereo, fine Corinthian leather (who remembers that commercial?), teak wood inserts kind of van. No, just a Dodge Grand Caravan equipped with a ramp and transfer seat. Holy shit. Adam would have more equipment granted him if he were to identify himself as disabled alone and not earn income, but he doesn’t. It’s a kind of effed up system where a
disabled person person with a disability (because after all, we’re people before we’re things, except jerks probably, because being a jerk kinda leads all other designations). Wait. Let me begin that sentence again: It’s a kind of effed up system where a person with a disability employed full time incurs more significant disability-related costs than a person whose disability is such that he cannot be employed, right? Like, come on, universe, there should be something in return for working hard while maneuvering a body that doesn’t always want to cooperate, right? Free minivan, anyone?
When I got home from work Thursday, my son was limping around the house. I’ve made mention of this before I know, but my son does not tread lightly. His gait is purposeful. His efforts to step gingerly were significant, so I know whatever happened really hurt. He was putting on new pants, I mean clean pants, because he had fallen on the way home from school. Of course, I’m all “Ouch! Holy cow, Honey, geez what happened?” (See, I try not to overreact because I fear he’ll take my lead and freak out himself, so if I play it cool, he’s less likely to freak out too, but make no mistake, I freak the hell out) to which he replied that some other kid wasn’t looking where he was going, rammed into him, and knocked him down.
I felt immense pride in his first aid effort. By the time I got home, he’d cleaned and bandaged the bloody wounds, quite capably I’m pleased to add. At the crash site, he didn’t cry (so he said), but got up and walked home. Friends, that he didn’t cry frightens me–the gashes and bruises on his knees were not insignificant. I would have cried, and I’m a badass with pain and illness. I was all prickly hot and then instantly ice cold seeing his knees. Since his diagnosis, I’ve come to believe my son’s threshold of pain is jacked up. He is bruised and battered often as he routinely trips and falls and/or bumps into things. His proprioception isn’t great and he is a GIANT 12-year-old; he has too little awareness of his body in space. You know when you crash and you’re like, “HOLY SHIT that’s gonna leave a mark?” He can rarely recall the source of the contusions he gets. This tells me he feels pain differently, or that pain is so routine, it doesn’t pay to attend to it. *sigh*
Anyway, his pants disintegrated–holes torn through and through. It prompted me to check his stack of sweatpants, to see if he had holes in others. He does. He probably hurts more routinely than I know; hopefully not so badly and visibly as this fall, but still, he falls. When your children get past the you-give-them-their-bath stage or it’s winter time, you don’t see your kids’ bare bodies very often. He’s so banged up. So banged up. And he so rarely even draws it to our attention. His bruises are on the outside; mine for him are less visible to the eye, but they’re there. On the upside? My wonderful friend Rebecca volunteered to cut off the pants from knees down and convert them into shorts. Glass half full right there. These remarkable friends I have? How could I not be glass half full?
My husband took big kid shopping just now because he needs shoes. He goes through shoes quickly because he walks heavily and the soles wear more than they would for a child with a more typical gait. He needs pants too, obviously. And while none of this comes close to Adam’s $60,000 van investment, shoes and clothes aren’t free either. What a weird revelation for my weekend wanderings. Yet at the end of today’s story, I’m encouraged, not the other way around. He took care of himself. He didn’t ask for help. He is stronger than I ever dreamed. How I love that boy. Have you seen these shirts? Yes.